Life with bowel cancer

KatieR

Questions . . .

John has had all the scans and tests
He has Rectal cancer and one node involved
We are seeing the Specialist for the first time on Thursday
I know he will explain everything to us
But ...
What questions should we ask
What questions do you wish you had asked
Etc
Thanks in advance
Cath ❣️

Bear G

Hi @KatieR
I’d suggest writing down all your questions ahead of the appointment then go through the list with your consultant.
Beating Bowel Cancer have prepped a few potential questions in this link:
www.beatingbowelcancer.org/...s-you-should-ask-after-diagnosis/
Hopefully that’s a good starting point
Big hugs
Bear
:x::x:

jinnyp

Hi @KatieR, I would say definitely take a notebook with you with a list of questions (there are lots on the link that Bear has given you but you may also have some of your own) and write down the answers because there may be things you want to clarify later or just don’t remember afterwards.

I can’t remember whether there was anything I didn’t ask but wished I had but there will be questions you probably think of later so write them down too when they are fresh in your mind.

The main things I wanted to be clear about were exactly where the cancer was, treatment options and risks/side effects and timescales for treatment so I had an idea of when things might happen and could prepare. I met my specialist nurse at my first appointment and then had a session with her afterwards and we went over things again. If I have questions between appointments I tend to email her while they are fresh in my mind but I am an impatient being and not good at waiting 😂

Hopefully you should leave the appointment with a plan for John and then you will both have something to work with.
I found that the blind panic I felt during the waiting time while all the tests were happening eased enormously once I had a plan.

Take care, Jane :x::x::x:

kitti

I have the same diagnosis, a rectal tumor mine is high up with a local lymph node enlarged. My plan is as follows- I have just finished 5 weeks chemo radiotherapy, then hopefully surgery followed by more chemo. I know everyone is different but i was told pre adjuvment chemo radio was standard treatment for my diagnosis. On my first meeting with my specialist my colorectal nurse came in with us, she was a great support and another welcome pair of ears. I still find my colorectal nurse a brilliant source of information and very approachable too. Hugs :x:

Lady GT

Good morning Cath @KatieR .

Please do follow the advice to write your questions down, and also take the time to jot down the answers during your appointment. There have been several occasions when His Lordship and I have remembered things differently once we got home. But because I'd actually written the answers down at the time, we were able to clarify it all.
I found it useful to try and push all emotion to the back of my mind and act as a secretary during an appointment!

There have been a few threads about this in the past but I can't find them so, off the top of my head;

* Exactly where is the tumour and how big is it?
* Is there evidence of any spread?
* What is the proposed plan of action, i.e. surgery, chemotherapy, radiotherapy?
* Will a stoma be necessary? If so, temporary or permanent?

At this early stage that's probably enough.
It's an awful lot to get your head around while you are feeling so emotional, but do try to make the most of tomorrow's appointment. It's too easy to come away more confused than ever.
Sounds like you are getting well prepared though, good for you!

Do let us know how things go?
:x:

KatieR

Many Thanks to @Bear G @jinnyp @kitti and @Lady GT
I feel more organised now ....I love a good list
Its peculiar in my pre bumland life I used to have trouble going to sleep
Recently I have been going off to sleep great but.....
Waking up at ridiculous o’clock thinking about ‘stuff ‘
and have found list making very comforting
I was going to write therapeutic but I cant spell it. ?
Cath. :x::x:

jinnyp

@KatieR, lol Cath, I believe you just did!! (spell it!) 😂😂 :x::x:

KatieR

The ipad brain spelt it as above I think I would have spelt it wrong ...!
Cath :x::x::x:

KatieR

Well ...we are home from The Talk with our kids
We didnt talk too much actually as the Grandchildren were there
But we explained that we will find out more tomorrow etc
So they are coming for tea on Saturday
I am having a nightcap to help me sleep
I know you are all rooting for us tomorrow
Thanks
Cath. :x::x:

jinnyp

Good luck tomorrow Cath, will be thinking of you both. Glad you have started the conversation with your kids - probably the hardest bit :x::x::x:

Lady GT

Thinking of you today @KatieR .
Big girl pants pulled firmly up to your chin, notebook in hand ... you can do this!

:x:

Pam

Just to wish you both good luck today @KatieR :x::x:

Jane39

@KatirR . Also wishing you both good luck :x::x:

Lady B

Good luck with the appointment today @KatieR, hope it goes well :x::x:

Rach

@KatieR hope the appointment goes well :x::x:

Alwyn

Hi @KatieR hope you get all your questions answered today. Good luck. :x::x:

KatieR

Well No big shock today .....Rectal cancer heading down towards the Anus Plus one Lymph node showing cancer ..
So into hospital on the 27 th of March for a Colostomy and removal of the node Then once hes up and coping with the colostomy he can come home
Then once everything is healed up He will have Radio and chemo therapy
Then we will see how effective the treatment has been and take it from there
Another week + of waiting .......
Cath. X
Ps Many Thanks for the advice regarding Questions to ask
Mr M covered just about all the questions and was really lovely and reassuring He spent Ages going through everything Then the Specialist Nurse went over it all again and gave us a Box with samples and a booklet to read
We couldn’t have asked for a better consultation
We came home really positive and full of hope that everything is going to be OK !

Bear G

That sounds good @KatieR
And now you’ve both got a clear treatment plan you can focus on that.
Big hugs
Bear
:x::x:

Lady GT

I'm so glad your appointment went well @KatieR .
It's great to hear that your consultant was so understanding and positive, that makes a huge difference.
Your journey sounds as though it's going to be pretty similar to His Lordship's - rectal cancer, colostomy, chemo/radiotherapy etc etc.
It seems like a lot to be facing (and it is!) but just take it one little bit at a time and don't look too far ahead.
There'll be bumps and grinds along the way, but you can do this!

:x: